Feature Friday: Morgan Gleason, Rare Disease Patient Leader

Do you remember being eleven years old? Most of us can only recollect things related to braces, cooties and the playground.

Morgan Gleason however, has a different story.

Her family knew Morgan to be a normal kid- she spent time with friends, was active, and participated in cheerleading. Then one day Morgan began to notice a sudden weakness, and found it harder to complete flips and stunts. Shortly thereafter, she developed a rash  on her elbows and knees as she continued to grow even weaker.

At age 11, Morgan was diagnosed with a systemic autoimmune disease called Juvenile Dermatomyositis (JDM). This disease is very rare and only affects 1 to 3 in a million people per year- clearly the odds were not in her favor.

“Within the next few months, we went through the process of finding multiple doctors for each of my specific needs,”  she shares.

Quickly, Morgan became familiar with the realities of today’s healthcare system.

“After four days of falling asleep around 2 or 3am and getting woken up multiple times every day for a medical student, then resident, then attending plus labs and nurses starting at 5:30 or 6am, I was very frustrated. I needed sleep to heal and couldn’t get it in the hospital.”

She may have been young, but she was on to something.

A video Morgan’s mom had taken of Morgan emphasizing  some of the flaws she saw in the system quickly went viral and was even posted on Forbes by e-patient Dave.

Soon after, Morgan started her own blog and began speaking to health systems and others who were intrigued to hear the perspective of the patient.

“My favorite is to speak at health systems and at conferences because I feel like I can impact many people at a time, and I often hear from many of the attendees after the event that one part of my story made a difference in how they treated patients going forward.”

She’s passionate about finding a patient-centered solution.

In one instance, Morgan was having difficulty sleeping as the light on her IV pump was bright and causing a headache. By communicating this to the nurse, and the nurse listening and trying to find a solution for this specific patient, she simply covered the light with a blanket rather than sticking to standard protocol.

“My favorite part of being a health advocate is showing people that it isn’t that hard to make some type of positive change that makes the experience better for patients. I think most people tend to think that change is not possible in today ‘s system, but many of the small changes make a huge difference in the eyes of the patient.”

Morgan continues to advocate for herself and those in her life, reminding everyone that shared decision making is possible in healthcare. She shares, “The current health system is based on what the doctors want and need and on their schedule and value systems. I believe that there is a way to restructure the system so that it works for doctors and patients. “

She has a point.

How many times do we hear of doctor’s frustration with patients for not following their treatment plan? Though easy to pass the blame on to the “lazy patient” could it be because the plan fails to specifically fit the patient’s values or circumstances?

Morgan’s treatment plan included staying out of the sun. The best part? She lives in Florida.

Morgan loves riding her horses and always has, was she now just supposed to stop? She’s a young woman, passionate about riding, looking to lead a fulfilling life- is this standard treatment plan really the healthiest option for Morgan?  Or can there be a conversation?

“We [medical team] worked together on a plan so that I could still get the personal satisfaction as well as the health benefits of riding my horse while also limiting the sun exposure as much as possible. By working with me on a solution, we found something we could both live with.”

Small changes do make a difference. Patients’ voices do matter. And the more you share your own story, and start a conversation with your healthcare providers, the quicker we can bridge the gaps in healthcare.

And Morgan is one of the many #PatientLeaders leading this movement.

“I’m a health activist because I know that it takes people like me sharing my story in order to change the system. I have seen the power of telling my story and the change it can make, and I want to make the healthcare system more about the patient and include the patient in a shared plan that takes the patient’s preferences and values into account.”

Follow Morgan’s journey of transforming healthcare by checking out her blog and following her on Twitter.

Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen on Twitter and Facebook and check out her personal blog, Serving of Support.

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